Lilith Black: "I fight hard for privacy, dignity and choices in my lifestyle. And people expect me to look normal." Photo: Stocksy, posed by model
Lilith Black* feels forgotten by disability support providers. She was the poster child for a large disability organisation, used to tug at donors' heartstrings, an image of where their funds were going
But the funds have been significantly reduced over time, and she's not leading the independent life she promoted and was promised.
The 37-year-old tells me wistfully that she was treated like a rockstar as a child, but now misses out on seeing her favourite rockstars because of unreliable support workers and a lack of income.
Todd Winther from Youngcare. Photo: Morgan Roberts
Lilith has cerebral palsy, uses a wheelchair and her speech is affected by her disability. She relies on support workers to shower her, cook for her and take her out. If her support worker doesn't make their shift, Lilith struggles with accessibility. Last week she had to wait for more than six hours to go to the toilet.
"It is a day-to-day exercise in begging and it feels like I need to justify every basic need," she says. "I fight hard for privacy, dignity and choices in my lifestyle. And people expect me to look normal."
Lilith believes she was "forced into an appearance of normality [but] I didn't want to look better to fit in." She was involved in advertising campaigns for the Victorian organisation; they took photos of her at school and while she did physiotherapy.
"It was long hard days for a little kid. I thought people liked me, but I didn't fully understand why I was chosen," she says. "I suppose it was because I was deemed to be cute and bubbly. I did have a choice and I agreed because I thought I was helping kids like myself and my parents had good intentions. I didn't ever know what support came through due to the campaigns."
Lilith believes disabled peoples' involvement in charities can be damaging.
"It severely disempowers people with disabilities, by framing them as both helpless and hopeless individuals", she said. "They are trying to evoke sympathy and blind compassion in the donating public and I think this is wrong."
Advocates believe the charity model of disability portrays people with disabilities as a tragedy, for non-disabled people to take pity on to feel better about themselves. Disability Planet, a UK-based advocacy organisation, believes many charities are focused on fixing medical conditions, rather than enabling independence. The organisation also believes charities "reinforce negative stereotypes of disabled people, particularly through advertising and marketing".
The Gammy Awards website highlights the problem with disability charity advertising: "Charity ads depict people with disability as victims of circumstance, tragic figures who are deserving of pity. Its often the most common way people without disability learn to define and explain disability."
"Whilst such appeals raise considerable funds for services and equipment which are not provided by the state, many people with disability find the negative victim-image thoroughly offensive."
Lilith told me the disability organisation no longer needed her when she went to a mainstream school aged 10. It is not uncommon for disability organisations to end their relationship with disabled people when they get "better".
Merritt Andrews is in her mid 40s and lives with the severe skin condition Ichthyosis. She found some skincare products that worked for her in the mid '90s, changing the appearance and texture of her skin.
Merritt's skin has significantly improved since childhood and now the charity that helped her as a child no longer wants her to share her "success story" with others, despite her advice helping younger patients.
"It's not like I'm the poster child for Ichthyosis anymore. No one will fund research to find a cure if your skin appears normal," Merritt laments.
The Gammy Awards team doesn't believe all charities are detrimental - they are fundamental to supporting our most vulnerable. But they believe charities need to move from the charity model of disability to empowering disabled people.
"We do need to educate charity managers and professionals to review the way they operate and ensure that funds are channeled to promote the empowerment of people with disability and their full integration into our society as equal citizens – requiring our respect and not our pity", the website states.
The Australian Council for International Development's code of conduct is helping the charity sector move in this direction, expecting its signatories to portray people in their campaign material "in a dignified, respectful manner".
Charity campaigns that allow collaboration with people with disability are empowering. Todd Winther, a Youngcare resident, takes control of how he is portrayed in the charity's campaigns.
The 31-year-old has cerebral palsy he co-wrote and starred in the national TV campaign which launched in October 2014.
Youngcare chief executive Samantha Kannerley is committed to preserving the dignity of people appearing in the organisation's advertising. They are mostly grant recipients and sometimes Youngcare residents who provide full, informed consent to appear.
"Youngcare will only print or produce what a person is happy to share in the context in which they have consented to," she said. "What is shared is usually a success story of how a grant has helped that person to remain at home or to leave aged care."
(*Lilith Black is a pseudonym. Name has been changed on request.)
Carly Findlay is a writer, speaker and appearance activist, challenging people's thoughts about what it's like to look different. She blogs at Carlyfindlay.blogspot.com. Follow Carly on Twitter @carlyfindlay